Hi, it’s Caroline, your disabled and chronically, physically, and mentally ill health editor! I saw more NHS professionals during my three years of uni than the average person probably sees in their entire lifetime – GPs, physiotherapists, specialists, and so on. Since then, I’ve just continued to add to that. If I was in the states, I can’t imagine what my quality of life would be like, but I imagine not great.

Nobody wants to save the NHS and its excellent, free at the point of use service more than I do. But I’d really appreciate it if we could work on doing that WITHOUT being ableist about it.

A health pledge: to look after yourself to uphold one of the NHS’s most effective health improvement strategies – prevention is better than the cure. So far so good, right? Quit smoking and eat better, that’s ‘the best help’ you can offer the NHS.

Right at the very start is what could be an accidental poor word choice, but is more likely deliberately deployed emotive language: “not become an unnecessary drain on resources”. Ouch. Remind you at all of the ‘scrounger’ language used to target those on disability benefits?

No human being should be made to feel as if they are a ‘drain’ for using services they need, that they’re entitled to, and that they have probably paid towards, but this kind of language directly targets people like me who are long term sick. I can live and work because I get healthcare, but I am instantly made to feel guilty because I couldn’t prevent my ill health with all the effort in the world (thanks epigenetics). There’s nothing I could have done as a child or as a younger adult, back in my college and uni days, when most of this kicked off. And there’s nothing that I can do now. But this guilt trip of not working to prevent this is laid at my door.

The best thing I, and most people, even if they are in a position to prevent their own ill health in a lot of circumstances, can do for my NHS is to use it when I feel I need to, and put the words “unnecessary drain” out of my mind completely.

‘Free Paracetamol’ isn’t Actually Free

This paracetamol is 25p, but it’s as low as 16p in Home Bargains. When you choose to get paracetamol for ‘free’ from the pharmacist or GP it actually costs the taxpayer & NHS about £10. Help save the NHS and choose to refuse free paracetamol when you can👍🏻✅ pic.twitter.com/Pws7DkG3ik

Attitudes like this seem uncontroversial, which probably explains why lots of primary care trusts, my own included, have stopped prescribing paracetamol. If you’ve seen the latest prescription charge (£8.60 per item) then you’d agree it’s bonkers to pay that for something you can get for a penny a tablet in the supermarket when you have the sniffles.

And you’d be correct. If you’ve caught a cold or lightly sprained your ankle running for the bus, then go to your town centre and pinch the pennies on the budget paracetamol – it is actually all the same stuff. Even if you get free prescriptions or a prepayment certificate, a one-off cost of less than a Freddo is the way forward.

But not everyone is in that situation. As many disability campaigners have pointed out, relief from that headache which will hopefully feel a little better when you wake up tomorrow is very different from living every day in chronic pain. My pain medication is the paracetamol combined with heavy duty, prescription-only type in the same tablet; but plenty of people avoid opioids for addiction reasons. Additionally, sometimes it’s much more expensive to prescribe the opioid and the paracetamol in a combined tablet than separately – something we see with tramadol.

It’s not possible to stockpile over the counter paracetamol for overdose concern reasons. Restrictions say 16 tablets per pack in supermarkets, 32 in a pharmacy, and no more than 100 tablets can be sold per transaction according to the law, but the best practice says that the limit should be two packs. But it would mean that a trip to the supermarket would be required every four days for those who need to take the maximum dose of paracetamol each day – and that’s not easy if you have mobility issues or are in pain all the time. Previously you could get your paracetamol delivered with the rest of your prescription to your front door, but without that it’s a necessary twice weekly trip out. A friend, relative or carer may be able to go for you in a lot of circumstances, but that removes the independence that we’re trying so hard to give to disabled people.

And that’s if you don’t even get into the argument of people who can’t swallow tablets for one reason or another. Liquid solutions generally don’t come with the 2p per dose price tag.

“A missed appointment costs £X.”

My mum recently cancelled an appointment at the hospital due to a funeral, and when a text came through with her replacement appointment, it reminded her to cancel this appointment if she couldn’t attend, because “a missed appointment in this clinic [hydrotherapy] costs £120”.

Chronically ill people are generally very aware of the amount of money that we cost the NHS for our treatment. I’m sure you can understand how upset my mum was to receive a text detailing how much a missed appointment costs when she had rang up to cancel one week previously, because of a death in the family. So upset, in fact, that she strongly considered cancelling all further appointments for a therapy her physiotherapist highly recommended because of this monetary figure that had been unexpectedly delivered to her phone.

Yes, we should attend the appointments we make and be reminded to cancel appointments we no longer need or can no longer attend, so that someone else may be offered it. It is a little thing we can all do (assuming the appointment booking and cancellation system is accessible, which of course it may not be for hearing impaired patients, for example) to maximise the patients that can be seen.

But telling someone how much their missed appointment costs tells them how much their treatment costs; and if you think that’s a lot, if you’re worried about being a burden, or an “unnecessary drain” on resources if we go back to the Big Issue pledge, you may interpret this as a guilt trip, and cancel even necessary appointments.

The Bigger Picture

There are things we can do to give tiny little boosts to the NHS, but they generally require cooperation by both sides – you and the service providers. Ask to see the same GP if you have multiple appointments about the same issue whenever possible. Cancel appointments you can’t attend so the surgery can offer them to someone else. Keep to one issue per 10 minute appointment, but consider booking longer appointments so that you don’t have to make multiple trips for multiple issues.

Of course, none of the above focuses on the real issue. In fact, much of it has probably been purposefully brought up in the media to distract you from the real issue – the NHS is being underfunded. For all of the government’s claims of an increase in funding, this doesn’t translate if you factor in increased population sizes and an ageing population. In the short term, suggestions as to what we can do individually are somewhat useful as long as we avoid the ableism as we do it.

But long term, the focus has to be on getting the money the NHS needs out of Jeremy Hunt and his Tory pals currently governing our country; and not blaming the disabled and the chronically ill for problems that aren’t our fault!

Caroline Marie McDonagh-Delves

Caroline is an intersectional feminist, body positive fat activist, and a champion of disability awareness. She is the No Bull Wellness Guru, which considering her chronic illness, is more for irony than anything else.

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